adventures in family, faith, and Down syndrome

Advocacy #18: Encourage doctors to get it right

Did you know that several states are working to pass laws right now that would require doctors to give current, unbiased information to parents who are given a Down syndrome diagnosis for their child?

If you think like I do, you might wonder why we need such a law. It seems odd, doesn’t it? Why wouldn’t a doctor provide parents with accurate and up-to-date information about this diagnosis? Why wouldn’t you expect that doctor to know what he is talking about and trust that he is giving you the most current data?

Well, sometimes they don’t. Actually, many times, they don’t. Page through the book Unexpectedand you will hear lots of stories about medical professionals who got it wrong. I believe that ours got it right. And I believe that part of why they were able to communicate so well with us is because we have some groups that really work hard to educate medical professionals on what life is like now with a child who has Down syndrome.

The National Association for Down Syndrome (NADS) is one of our local groups and is actually the group started back in 1961 when a group of parents in the Chicago area decided to raise their babies at home rather than sending them into institutions. Among a lot of other programming, they send groups of parents and advocates into area hospitals to meet with medical professionals and help them learn about our lives. They encourage physicians to ask questions and open the line of communication so that others can move past their initial fears.

On a national scale (and even international), the Down Syndrome Diagnosis Network is also working hard to provide current, relevant information to medical professionals so that they can work with families. They offer a variety of print materials for doctors and nurses to read for heir own knowledge, as well as items to share with families.

Both of these organizations are well worth your time to check out. We are so thankful that we and others can access this information!!!